So in the ultimate good news/bad news case...I went to the doctor last week and because my CDI score was so high, I qualified for another round of 4 stem cell infusions in the Osiris Prochymal study. I begin the week after Thanksgiving. Back to smelling like an onion, the worst side effect of the treatment. I am still not sure if I got a Placebo or stem cells in round one of the Osiris Prochymal study. Keeping my fingers crossed this time. Chances are pretty good given two rounds of treatment that I at least get a 50% dose. Nothing like being a lab rat. In the meantime I continue to have bad days, and OK days. Good days are pretty rare, and lately there have been more bad days (bad cramping, night sweats, 20+ trips to the restroom, etc). I know alot of you out there deal with worse Crohn's Disease Symptoms than I have.....so I am not complaining. Keep your heads up Chronies.
Heading up to Indiana for a week to spend time with family. As always, thanks for checking out my Crohn's Disease blog. Safe travels and I will check in around Thanksgiving.
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4 comments:
I am a 27 year old female and my doctor is 90% sure that I have Crohn's disease. Next week I go in to see another specialist for a capsule endoscopy (have you ever had this?) which should prove my primary gastrointerologist (god, I have two, how freaky is that) right or wrong.
I've been on Lialda (which is for ulcerative colitis- although I think the two are closely related?) for a little over a month and until about two weeks ago it was keeping the majortiy of my symptoms in check. The past two weeks have been back to being awful though.
I am so glad that I found your blog as I don't really know what to expect in terms of long term effects and general day to day issues besides what I've been going through, what my doctor tells me, and what I've read online.
Thanks so much for sharing your experiences. I look forward to reading more of your posts.
Kristin - I keep this damn thing up for people like you and comments like that. So thanks, and welcome. I haven't had the capsule endoscopy, but it sounds alot better than the traditional one. Have they done a colonoscopy? Pretty much the standard diagnosis tool. If you have any questions, let me know. Good luck.
Thought I'd jump in with another word of thanks. I've subscribed to your blog for a couple of months now....found you just after my 15 y.o. was diagnosed with Crohn's in September.
If it weren't for your blog, it wouldn't have occurred to me to get her a flu shot. Since she's still on prednisone, I think a flu shot is critical. Thank you!!!!
I was contemplating joining the prochymal study. Any words of wisdom? Have you heard about any life threatening side effects?
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